Enter the Deuce, Part VII

When I’m not at the hospital, I pine for the smell of Matthew. Newborns have a smell that is as fresh as fruit and as mammalian as a dog’s. The smell is pleasant in direct proportion to how clean they are. One hot afternoon in a car seat and a baby can ripen like an old water bottle with protein smoothie. I’ve been sitting by his side for most of the last hour watching him sleep. Twice, I’ve opened his isolette to get a whiff of him. Despite the faint smells put off by all the medical equipment, that aggressively sterile air that occupies an incubator, I can still discern that inimitable newborn scent. It’s rose petals and dreams, talc and mother’s milk.

I’ve still not held my son. Here we are, more than three weeks since his birth and I didn’t even hold him long enough to pass him from the obstetrician to the neonatologist. The best I’ve managed so far was one afternoon late last week when his nurse turned him on his side and I was able to rub his back. It was the largest patch of his bare skin I’ve been able to caress. Those lazy afternoons of shirtless naps with his older brother Philip when he was an infant seem less memory than fantasy, like I borrowed a memory from someone else who told the story so well I imagined it into my own life.

I’ve been watching him sleep, studying him, trying to memorize him. Tonight my wife and I will take a phone call from the head of pediatric surgery for Kaiser in Southern California. We are going to decide tonight whether we are willing to allow this doctor to perform surgery on our son.

I’m studying my son because I want to know him. I’m studying my son because I’m afraid of the surgery. I’m studying my son because of that clichéd “if something happens.” I’m studying my son now, so that if we lose him, I might better remember him.

Our doctors have come to the conclusion that the Deuce needs surgery, that the best outcome for him is if they perform a ligation of his thoracic duct. The prospect of someone cutting open my three-week-old son scares my like no Stephen King novel ever could.

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I don’t feel like we have as full a set of data as would help any of us make this decision. Certainly, I don’t know enough to feel good about the decision, and by “good” I mean confident that this is absolutely what we should do. The amount of fluid draining from him has been both significant and fluctuating wildly. Three days ago he drained 59ml, the next day 67ml and then yesterday 40ml. The fluctuation dispenses hope like an empty vending machine.

Our doctors—Matthew’s doctor’s—are willing to allow us to wait, to see if the effusion decreases. No one knows what to expect. The head of our neonatal unit says that prior to the Deuce, he’d seen maybe a dozen cases of chylothorax effusion. Yet even as they are willing to allow us to wait, they say their advice would be to operate now. Kaiser’s best neonatal surgeon will be in Downey today and he’s not available very often, as in no one knows when he will next be at this hospital to do non-emergency surgery.

Which brings up an interesting point regarding the Deuce. His case, because he is stable, is considered non-emergency. Even though were we to remove him from his isolette he would die in a matter of hours, his situation isn’t an emergency because he doesn’t need the surgery immediately in order to survive. This surgeon may not return to this hospital for weeks, we’re told.

I peppered a different doctor with my questions regarding how we should evaluate Matthew’s current state, the long gap in data, the potential harm leaving all that fluid in him for so long, his chances with the surgery and without. I made the point, “For us to grant consent, we need a clear picture of how he’s doing and I don’t believe we have that. How do we get it?”

The doctor capitulated and said we should talk to the surgeon. He left and when he returned a few minutes later he said the surgeon would call us later that day, some time after 5:00.

The call never came.

My friends in project management and startups like to talk about “the critical path.” For those unfamiliar with the term, it’s the real world’s answer to the crux move in climbing, the hors categorie climb in a Tour de France stage. What these doctors don’t seem to appreciate is that we—our consent—is their critical path. If they give us bad information, incomplete information or ignore us, they don’t get consent.

While I can’t say if they’ve been giving us the soft-sell or not, we’re able to count and every doctor we’ve talked to at this point thinks surgery is a good idea. That detail brought me around to a point of willingness, willingness to discuss the surgery.

Weighing on this is what my wife told me a nurse said of the surgeon in question. She said, “Melinda thinks he’s amazing. She said he has ‘magic hands.’”

I’m in a space where I know I would benefit from a ride. I don’t feel like I can go hard, but I am aware that there’s considerable steam in the boiler, that I need to blow some of it out of my system. Yet I’m concerned that what I need to do is pull on cotton, not Lycra and head to the hospital and see if I can’t talk to this surgeon. Emotionally, I’m still not ready for the surgery, but they’ve put this fear of availability into where I tremble at the thought that The Who might not come to my town on their next tour.

19 comments

Many of my friends, riders and otherwise, are doctors. They are all, when acting in their official capacity, litigation averse. They dispense their advice in the most conservative, cautious terms possible. It covers their a** later, the lawyers advise.

If you’re getting a soft, yet universal sell, it’s all your doctors saying the same litigation averse thing: You really need to do this. We’re just not gonna push hard, because we can’t, or at least, shouldn’t.

It’s all code. This medical double speak. As a layperson, impossible to comprehend in the heat of the moment. When you’re thrown into a stressful situation that needs quick, decisive decisions and actions.

Luckily, I have a cousin (surgeon), riding buddy (ER doc), and college best friend (radiology). When I’ve been in situations like what you’re facing (a sister-in-law in a coma comes to mind), I get these guys on the phone, tell ’em what the doctor is advising. I’m usually instructed to get a chart, read it to them. And they tell me what the doctor is “saying” and what he “means.” What he can’t say – it’s what he should say, but the lawyers won’t let him.

Do you know such a doctor? A friend who will give it to you straight, without the legal caution? One who can interpret the “code” in your time of stress and confusion? Can’t tell you how much having a doctor friend in my corner has helped over the years.

Ride. It always help clear my head. It helps me get out anger and frustration. Sleep helps too but sometimes it’s hard to come by. Sometimes things are out of our hands and the only thing we can do is hope you have the best info and make the best decision you can in that situation. Fear not for little Matthew. You may not believe in an afterlife but one comfort of believing in that is that it can provide a better place for such innocents when their physical bodies fail. So, do what you can, and trust that whatever happens it will be for the best for him.

I think Full Monte’s piece of advise is an excellent one. I have an ER doctor who is a riding buddy. He has been invaluble to me in several instances in the past where I needed unfiltered medical advice for myself and loved ones. I can only imagine the tug-a-war that is going on in your hearts and minds right now. All you can really do in any situation is to make the best decision you can with the information given to you at the time. Search your own feelings and I bet you already know what is the right thing to do for the Duece… My thoughts and prayers are with you and your family.

I can’t imagine the stress you are under. Please realize you will never have “enough” information to make the decision. It will have to be a gut decision – do I attack now or wait and see if the break is brought back. As someone succintly said

Courage, Padraig. Yes, there’s always uncertainty, and it gnaws on one’s soul to determine if you’ve made the right decision. Sometimes there’s not even a way to decide what “right” means.

Full Monte’s advice is excellent. My family is large and we have lots of doctors, so we refer to them (preferably someone not emotionally invested) with the treating doctor’s statements, and that helps interpret the information.

Finally, I can completely relate to “studying” a family member under medical treatment. I still remember how odd and fragile my dad looked after cancer surgery, and yet how still dogged he was doing his recommended “rounds” of the ward to promote circulation – vestiges of his old self.

Every time I’ve made a decision under the gun, “because I had to” it’s gone very poorly. To bring it back to the bike: if I attack because my head says there won’t be another chance – I find myself spit out the back in a matter of minutes. You have to attack because the legs are fresh and you feel good.

This is a huge decision and you need to feel comfortable with it before moving ahead. It might be advice from a friend as suggested above, it might be the look of wisdom and confidence in this surgeons eye, it probable won’t be overwhelming data and facts.

‘Comfortable’ might be knowing that we never have what it takes to make these kinds of decisions in the rational way that we try to make decisions in our every day lives…

But you need to be at some kind of peace with the decision, either way.

The finish line is approaching, but that alone isn’t reason to leave the draft and start the sprint — don’t go too early.

+1 to getting a friendly uninvolved Dr or ped RN to “interpret” what’s going on. There is no amount of additional quantitative data that will help you justify/rationalize this difficult decision. You need a pro’s angle on the existing data and qualitative medical opinions that you have now.

Let me know if you need someone to talk with. Not sure what I can do here from the 206 (I have a family connection to the pediatric medical community here) but if there is anything, I will try.

Good luck, brother. We are thinking of you here. Red Kite Prayer time, all the way.

Padraig, I would make sure your son will have a pediatric anesthesiologist for the surgery, too- he or she will be the one taking care of every other aspect of your son’s physiology and care while the pedi surgeon is operating. This is what I do for a living, and you don’t want a generalist taking care of a newborn during thoracic surgery- you want an expert specialist.

Email me if you want a connection for a second opinion- I have good friends and colleagues at LA Children’s (which is where my newborn granddaughter had successful open heart surgery 6 months ago).

Wishing Matthew a quick and complete recovery, and a rapid return home to his very loving family.

I think Full Monte said it best. Whatever decision you make will be the best decision you could make with the information available up until that moment. Your intent is true. Thanks for sharing your thoughts, we’re all rooting for The Deuce and all of you.